Friday, November 25, 2011

Headache Diary 2 months, 2 weeks, and 4 days: Black Friday Blahs

I am not well today. I have taken my medicine, but I keep getting a jabbing pain on the right-side top of my skull. Additionally, I have had a lot of facial de-sensitivity today and the primary spot that is somewhat numb is at the very back of my tongue on the right side and the right side of my throat. This keeps causing a bit of nausea. I think my internal triggers are treating it like the natural numbing one gets right before they vomit. That is unpleasant, I know, but I am writing these to mark my experiences. This is what I am experiencing today. I have company over that I really want to enjoy, but all this is making be a bit down. Thank you never-ending headache.

Tuesday, November 22, 2011

Headache Diary Day 75: Not TMJ

Just as I am still somewhat new to this never-ending headache (or having anything wrong with me in general) we are still ruling things out. I went to the dentist today for my 6 month cleaning and was due X-rays as I had not had them done in a good while. The dentist says that my headache is definitely not a symptom of TMJ or anything dental in nature. He said my joints look great and there is no mis-alignment of my jaw whatsoever. After telling him about my headache for 75 days and the reduced sensation in the right side of face off and on daily, he says that definitely sounds like dysfunction of the trigeminal cluster of nerves, he cannot imagine dealing with a nonstop headache for 75 days, and he wishes he could tell me it was TMJ. If it were that...he would know exactly how to fix it. Oh well, check one more possibility off the list. All things again point to Hemicrania Continua.

Tuesday, November 15, 2011

Headache Diary Day 69: Headache This Evening

Well, the headache was strong enough to push through the Indomethacin this evening. I was able to make it until about 8pm, at which point I felt that sleep would be the only thing that might fix my headache. Time was I could lay down when I had a headache and wake up in an hour or so and feel great. That was pre-onset some 69 days ago. This right side headache is so stubborn, so...Ugh. Suffice it to say I went to sleep with my head throbbing and woke up after it was time for my evening dose. Headache. Ever-present, more stubborn than I am, headache. I have now taken my evening dose late, but given the strength of this thing this evening I am not sure I will see relief before morning. I hope this is just a fluke and I am not developing a tolerance to the Indomethacin already. I have read that some people with Hemicrania Continua develop a tolerance to the only medication that treats it and eventually max out on the dosage. At that point it will do them no more good and the headache is untreatable. Someone said to me today that that will not happen, doctors and pharma people will make sure that there is another treatment or drug for this disorder. I think that is very wishful thinking from someone who does not have this. In all honesty there are far worse conditions that do not get adequate research to find a treatment and a cure. I am not sure that this one has anyone's priority. *Sigh*

Sunday, November 13, 2011

Headache Diary Day 67: To Sleep, Per Chance to Dream

I have slept so much this weekend...and accomplished nothing. Though I have nothing due yet, I should have been reading for my graduate course. I should have been grafing papers, but instead I slept a lot and thought a lot. I have no doubt that lessening stress might alleviate temptation for some of the triggers for the sometimes acute exacerbations that I have as overtones to this seemingly never-ending  right-side headache. That stated, I cannot see my current life choices and occupation yielding a less stressful existence. When thinking lately about what would make me happy and less stressed (though there is no indicator that stress is a factor for hemicrania continua), contemplating education and the forseeable future of it is nonresultant in a less stressful outlook. Finding motivation to plan and grade gets more and more difficult. There is no doubt that I can teach...the ones that want to learn, but that chunk of the school population seems to get less and less in number by the year. I have no answers right now...about anything...which only adds frustration. I have been dreaming of opening a shop, but I am not sure that is advisable or possible in our current economy. Sleeping seems to increase my headache and my answers.

Friday, November 11, 2011

Headache Diary Day 65: Today's Catchy Title is not Catchy at All...

Am having a weird day. No school today as it is Veterans Day. Got up, took my 6am dose of Indomethacin and then slept 'til 10am. I thought the sleep would be much needed and have been welcomed by my body and mind. Instead, the right side of my face has had an odd warmth to it and reduced sensation all day. Have also taken my 2pm dose as well, and my head does not hurt per se, but it literally feels like someone has their thumb on my right temple and is applying gentle constant pressure.

Monday, November 7, 2011

Headache Diary Day 61: Home Again Home Again...

I have been out of town for the couple of days and have not blogged...mainly because I have been busy and not in too much pain. That is in no way meant to suggest that my headache is gone. This is day 61. I have crossed the two month threshold. People mentioned that I looked better this weekend than when they had seen me a month ago. One word answers that: Indomethacin. When I am able to take it, alone, every 8 hours everything is absolutely manageable. If I miss/delay a dose I know very quickly. Last night, for example, I fell asleep in my hotel room whilst working on a Graduate course I am taking. I was late for a dose when I woke up and boy did I notice. I hate that it sounds like I am dependent on this prescription in order to function, but it makes SUCH a difference. I am good at the moment. It is 7pm and my face is starting to get that numb sensation that I get before it is time for another dose. 7pm is a bit earlier than usual, wonder what the headache would feel like right now if it weren't being masked?

Thursday, November 3, 2011

Headache Diary Day 57: Side Effects Include Pirate Swagger

Had a wild ride today on the Zonegran. Suffice to say I know how Jack Sparrow sees the world w/o the Rum. Headache was full-blown all day, I had all kinds of swagger (felt like sea legs), hands kept turning bleu and getting cold. After three attempts I got ahold of my Neurologist's nurse who confirmed with the doctor that I am to take no more Zonegran. It was somehow overriding the Indomethacin. What a kids were all great today though. Toughed out the school day. It is now after 6PM and the Zonegran appears to have entirely worn off. The Indomethacin is now working again and my headache has subsided. I still feel a little wobbly, but I am sure that will get better as well.

Wednesday, November 2, 2011

Headache Diary Day 56: Neurologist Knows Best?

I had an appointment today with my neurologist. He is still hooked on the idea that this infernal 56 day drumbeat that only subsides for 7 1/2 at a time when I take Indomethacin is some form of regular migraine. That is interesting considering the regular migraine meds like Imitrex and Depakote did absolutely nothing to it when taken for several days. The only thing that helps is Indomethacin...usually used as the last diagnostic step in diagnosing Hemicrania Continua. He feels that I am likely not suffering from the thing that diagnostically I meet the criteria for based on 3 points: (a) It far too rare he says, yet I have met three sufferers in the past few days that have been very helpful in easing my concerns and making me feel like less of an oddball. (b) I have been proactive and have not allowed the headache to go 3 months unchecked...only 56 days. (c) Lastly, he feels it is unlikely that I could possibly suffer from Hemicrania Continua because I am not a woman! I can find nothing that states that mostly women suffer from it. Am wondering if I am in the right place...with the right specialist. He added an anti-seizure med for me today to take with the Indomethacin. It is called Zonegran by its trade name. Thankfully, I was able to get the generic at my pharmacy. I have spent so much on trials of medicine that did not work and are now sitting in my wasted over the last 56 days. I am a teacher, I do not have money to waste. I will try this Zonegran as prescribed, but I am not eager. Am also not pleased that he wants me off of the Indomethacin within a relatively short time as its longterm use is not the best for my organs. I cannot imagine that a constant headache is good for my muscles and the big grey organ inside my skull either. Lastly, he mentioned that Lithium is a possible treatment if the Zonegran does not extend the effects of the Indomethacin so that I can drop to taking it only once a day, twice a day, or as needed. I am disinterested in taking Lithium ever. I am aware of the effects it can have on an individual. And...I still have a headache. It is getting close to time for my evening dose and I can tell. It is 7:40 Eastern Time in the US and I am starting to go numb on the right side of my face and the right half of my tongue. No reason for immediate concern...this happens every day approximately 3 times as my Indomethacin starts to wear off. Before taking it the right half of my face was simply staying numb all the time.